The Suffolk County Mental Health Project

We know that individuals diagnosed with serious psychiatric disorders face many challenges throughout their lives. But little is known about their long-term trajectories. Do the many challenges lessen over time? Or remain the same or worsen?

These questions have been debated for more than 100 years. The pendulum has swung from those who thought such diagnoses meant long-term decline to those who believed that 10 to 15 years after the diagnosis, people show considerable improvement in their daily lives.

These questions are what drove a team of researchers from Stony Brook Medicine, led by Evelyn Bromet, PhD, together with other faculty in the Department of Psychiatry at Stony Brook University School of Medicine and community providers throughout Suffolk County to embark on a long-term study that started in the late 1980s. More recently, Roman Kotov, PhD, who joined Stony Brook’s Department of Psychiatry in 2006, received a grant to enable the evaluations at the 20-year mark and to continue them at the 25-year point.

Two influential papers on the first 20 years of follow up were recently published in the November issue of the American Journal of Psychiatry: “The 20-Year Longitudinal Trajectories of Social Functioning in Individuals with Psychotic Disorders” (Eva Velthorst, PhD, et al.), and “Declining Clinical Course of Psychotic Disorders Over the Two Decades Following First Hospitalization: Evidence from the Suffolk County Mental Health Project” (Roman Kotov, PhD, et al.). An editorial about the study by a world-famous schizophrenia researcher, Nina R. Schooler, PhD, appeared in the same issue of the journal.

The Suffolk County Mental Health Project

The Suffolk County Mental Health Project was an observational study of people admitted for the first time in their lives to a psychiatric hospital. It was the first of its kind in the US to involve all 12 existing inpatient programs in this county-wide endeavor. The authors were not involved in the participants’ treatment. Their role was solely to ask participants and their families about all aspects of their functioning and about their satisfaction with the treatments they were receiving.

Maintaining contact with the study participants was challenging for many reasons. However, because the study has had long-term support from providers and most participants, the research team was able to stay in touch with participants throughout all the years, despite the fact that some moved away, changed providers or did not have time for lengthy interviews.

Who was eligible for the study?

Criteria for participation in the Suffolk County Mental Health Project included the following:

Everyone who experienced psychosis at the time of their initial hospitalization between September 1989 and December 1995.

Suffolk County residency, an age range between 15 and 60

Ability to understand the assessment procedures in English

Capacity to provide written informed consent

At year 20, the study also included a neighborhood comparison group. Between 1989 and 1995, 628 participants were enrolled. They were on average, in their late twenties, over 50 percent male and predominantly Caucasian (as was reflective of Suffolk County at that time). Two-thirds of the participants were from lower income families and many did not finish high school.

The diagnoses were carefully made by a team of study psychiatrists based on the interviews and other information. More than half were diagnosed with schizophrenia, and 35 percent with depression or bipolar disorder. The remainder had a mix of other psychotic diagnoses.

Social Functioning and Overall Functioning

Velthorst et al.’s paper zoomed in on the social functioning aspect over time, while Kotov et al.’s paper focused on the overall functioning. The first paper found that social outcomes really differed between participants in the study and origins of these differences could be traced to childhood, when some warning signs, although subtle, could be observed.

Kotov et al. concluded that it’s not just social functioning that is affected when one is living with a psychosis. Although some participants do very well, others continued to carry a heavy burden of symptoms. The latter finding came as a surprise, because outcomes in European and developing countries have been more positive. While many factors contribute to the discrepancy, other countries have universal access to more integrated healthcare systems compared to the US system, which is fragmented and expensive.

Study Conclusion

One conclusion drawn from this study is that more resources are needed to help prevent the consequences of mental illness.

“While recovery is the right goal, it’s important not to underestimate what it takes to achieve recovery, namely an effective healthcare system. If we, as a society, are serious about helping individuals recover from psychotic disorders, it requires spending more on healthcare for this population,” said Kotov.

“I hope that people who design public health interventions — state or county or private foundations — will be able to use the data from our study as evidence for why they should fund such programs,” said Bromet.

The team of Stony Brook researchers continues to evaluate participants at the 25-year mark. “The openness and continued willingness of the participants to contribute to science time and time again has been truly remarkable,” said Kotov. “Their efforts have shed new light on serious mental illness and will guide health care in the future.”